...and Isaak is on his way to get his stoma closed. Finally.
His surgery is scheduled for ~7am and Bekka and Isaak are supposed to be at UNC by 6:30. Our wonderful, fantastic, incredible, (for)giving friend Cathy is baby sitting Penny, as I have a work engagement. Unbeknownst to Cathy until this afternoon, I have to be at work at 7am. Which means she has to be here by 6:30. Normally, 8am suffices, but not today.
Thank you! Your diet Cokes have chilled overnight in the fridge.
As to the actual procedure, we are ecstatic this is finally happening. As excited as we were by the incredible symbol of Isaak's improving health having his g-tube removal was - we would rather that sucker had stayed in. 2 1/2 weeks of constant gauze/maxi/tape/duoderm to no apparent effect on his stoma site has been frustrating and worrisome. A couple of quick stitches tomorrow should make this a fading memory and will be one more step towards a "normal" life for a special little boy and his worn-out parents.
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Thursday, April 14, 2011
Monday, January 24, 2011
Goodbye Broviac and Hello 200th Post
UPDATE: Broviac removal is complete. They didn't even have to cut the little guy. The surgeon was able to work the catheter out gradually. He'll be bandaged for a couple of days then home free. Conveniently, they also changed his g-tube for us while they were in there. That isn't a particularly painful thing to do, but can be uncomfortable.
Tomorrow is a big day for little Isaak. A very big day. As his blood work has continued improving, the docs were comfortable with scheduling Broviac removal. We don't have a time slot yet (please don't let it be 6am, please don't let it be 6am!), but at some point tomorrow, Isaak will be Broviac free for the first time since July 13, 2010. The little fella has progressed beyond the most optimistic expectations of his various doctors and this is the latest sign.
The procedure is pretty minor, but he will have to be sedated/put under for a brief period. Apparently, we were extra-careful taking care of the Broviac and the internal cuff that holds it in place is really embedded in tissue. It's supposed to be that way, but the surgeon told us that in a lot of cases the catheter will just slide out of the patient when it's time to remove it. I guess this means we are good parents/nurses...
To top off the joy associated with this event, we have started dramatically reducing his g-tube feeds. A few weeks ago they let us drop it to 20 hours, then to 16. And 2 weeks ago we received clearance to start dropping by 4 hours a week. Right now, he's only hooked up for 8 hours overnight. That will drop to 4 hours on Friday and (pending positive blood work) nothing next Friday!
If this happens I'm not sure exactly what Bekka and I will do. It will be the first time we've had a little boy not hooked up to tubes since Ollie was 7 months old. I expect there will be dancing and tears of joy. You can't even imagine...
Isaak only has a few blood test results that are out of range, including phosphorus and a couple of liver enzymes. He'll probably have to continue getting monthly or bi-monthly blood draws for a bit to make sure he is getting fully hydrated and not having kidney or liver issues (thank you TPN and preemie-ness). That was one nice thing about the Broviac - they could draw labs without having to stick him. We'll still trade (not sure what Isaak's opinion is on this yet). Much like with the Broviac, the g-tube will stay in place for a while to make sure he is doing well enough to go without.
In other areas, Isaak is doing fairly well. He is still lagging in gross-motor skill development and muscle strength but has made really good strides the last few weeks thanks to weekly physical and bi-weekly vision therapy. We work with him everyday to improve strength. We have been able to play with him more and more as he's spent less and less time hooked up to feeds. He appears to be responding well. Why is he lagging his sister? Other than being a male preemie (a huge strike), he was also unable to be handled and/or moved as much as Penny. Thanks to the tubes, we actually had to restrict his movement. Even though preemie developmental milestones are based on adjusted age, they frequently lag in development. By 2, they are usually caught up. While mommy is very confident, daddy waffles between extreme concern about Isaak's physical skills to very impressed with how he's doing on a given day. I'm afraid that Ollie left daddy overly sensitive to these things. Here's to more progress and less worry!
He has a follow-up at Duke Eye Center on Thursday (busy week). The vision therapist from the Governor Morehead Preschool has been quite happy with how he's responding. We'll see how the eye is physically doing this week and go from there. Externally, it looks to be healing well and he is even still tracking objects with both eyes. His left eye looks a bit odd with it's missing lens and huge pupil, but if the eye is functional at all, we are ecstatic parents.
Looking back over entries in the last months, it's clear that Penelope has received short shrift due to her "boring" lack of medical problems. Well, Penny is anything but boring. She is a mess. Her head is something like a radar dish as she constantly whips it around to absorb EVERY little detail of the world around her - especially when she's sleepy (which is also when she'll slap her leg to keep from falling asleep). She loves to play rocking horse with whomever is holding her (whether they are ready or not) and has been testing her lungs at maximum volume regularly for weeks. She also likes to raise both legs and slam them into the mattress or floormat.
Repeatedly.
For an hour.
The only weird thing is a persistent refusal to roll over. She appears to have the necessary strength and coordination and can roll to either side with ease, but just won't quite go on over. My theory is that one day she is just going to stand up, turn around and lie down on her belly rather than bother with rolling.
Oh yes, recent measurements on the two: Both were 25.5" long (a couple of weeks ago). Penny is now over 17 pounds and Isaak is over 16.5 pounds. These babies have come a long way from 1lb 7oz and 1lb 11oz.
Know that we haven't forgotten about photos or videos. The last few weeks have been inordinately busy with work, doctor appointments and family emergencies. Soon though, we promise!
----------------------------
This is the 200th entry on Ollie's Tale. A little over 2 years ago, Bekka posted this. Our first, painful entry in the too-short story that was to be Ollie's life. We look forward to many more posts that are less and less about medical news and more about the little (and big) joys in our life. Bekka and I have talked about creating a new blog more focused on the twins and preserving Ollie's Tale as an archive of his struggle and the struggles of his little brother and sister as they first entered the world. We haven't made a final decision yet, but will soon. Penny and Isaak deserve their own space, I think.
Tomorrow is a big day for little Isaak. A very big day. As his blood work has continued improving, the docs were comfortable with scheduling Broviac removal. We don't have a time slot yet (please don't let it be 6am, please don't let it be 6am!), but at some point tomorrow, Isaak will be Broviac free for the first time since July 13, 2010. The little fella has progressed beyond the most optimistic expectations of his various doctors and this is the latest sign.
The procedure is pretty minor, but he will have to be sedated/put under for a brief period. Apparently, we were extra-careful taking care of the Broviac and the internal cuff that holds it in place is really embedded in tissue. It's supposed to be that way, but the surgeon told us that in a lot of cases the catheter will just slide out of the patient when it's time to remove it. I guess this means we are good parents/nurses...
To top off the joy associated with this event, we have started dramatically reducing his g-tube feeds. A few weeks ago they let us drop it to 20 hours, then to 16. And 2 weeks ago we received clearance to start dropping by 4 hours a week. Right now, he's only hooked up for 8 hours overnight. That will drop to 4 hours on Friday and (pending positive blood work) nothing next Friday!
If this happens I'm not sure exactly what Bekka and I will do. It will be the first time we've had a little boy not hooked up to tubes since Ollie was 7 months old. I expect there will be dancing and tears of joy. You can't even imagine...
Isaak only has a few blood test results that are out of range, including phosphorus and a couple of liver enzymes. He'll probably have to continue getting monthly or bi-monthly blood draws for a bit to make sure he is getting fully hydrated and not having kidney or liver issues (thank you TPN and preemie-ness). That was one nice thing about the Broviac - they could draw labs without having to stick him. We'll still trade (not sure what Isaak's opinion is on this yet). Much like with the Broviac, the g-tube will stay in place for a while to make sure he is doing well enough to go without.
In other areas, Isaak is doing fairly well. He is still lagging in gross-motor skill development and muscle strength but has made really good strides the last few weeks thanks to weekly physical and bi-weekly vision therapy. We work with him everyday to improve strength. We have been able to play with him more and more as he's spent less and less time hooked up to feeds. He appears to be responding well. Why is he lagging his sister? Other than being a male preemie (a huge strike), he was also unable to be handled and/or moved as much as Penny. Thanks to the tubes, we actually had to restrict his movement. Even though preemie developmental milestones are based on adjusted age, they frequently lag in development. By 2, they are usually caught up. While mommy is very confident, daddy waffles between extreme concern about Isaak's physical skills to very impressed with how he's doing on a given day. I'm afraid that Ollie left daddy overly sensitive to these things. Here's to more progress and less worry!
He has a follow-up at Duke Eye Center on Thursday (busy week). The vision therapist from the Governor Morehead Preschool has been quite happy with how he's responding. We'll see how the eye is physically doing this week and go from there. Externally, it looks to be healing well and he is even still tracking objects with both eyes. His left eye looks a bit odd with it's missing lens and huge pupil, but if the eye is functional at all, we are ecstatic parents.
Looking back over entries in the last months, it's clear that Penelope has received short shrift due to her "boring" lack of medical problems. Well, Penny is anything but boring. She is a mess. Her head is something like a radar dish as she constantly whips it around to absorb EVERY little detail of the world around her - especially when she's sleepy (which is also when she'll slap her leg to keep from falling asleep). She loves to play rocking horse with whomever is holding her (whether they are ready or not) and has been testing her lungs at maximum volume regularly for weeks. She also likes to raise both legs and slam them into the mattress or floormat.
Repeatedly.
For an hour.
The only weird thing is a persistent refusal to roll over. She appears to have the necessary strength and coordination and can roll to either side with ease, but just won't quite go on over. My theory is that one day she is just going to stand up, turn around and lie down on her belly rather than bother with rolling.
Oh yes, recent measurements on the two: Both were 25.5" long (a couple of weeks ago). Penny is now over 17 pounds and Isaak is over 16.5 pounds. These babies have come a long way from 1lb 7oz and 1lb 11oz.
Know that we haven't forgotten about photos or videos. The last few weeks have been inordinately busy with work, doctor appointments and family emergencies. Soon though, we promise!
----------------------------
This is the 200th entry on Ollie's Tale. A little over 2 years ago, Bekka posted this. Our first, painful entry in the too-short story that was to be Ollie's life. We look forward to many more posts that are less and less about medical news and more about the little (and big) joys in our life. Bekka and I have talked about creating a new blog more focused on the twins and preserving Ollie's Tale as an archive of his struggle and the struggles of his little brother and sister as they first entered the world. We haven't made a final decision yet, but will soon. Penny and Isaak deserve their own space, I think.
Sunday, December 19, 2010
Arrrrrrr, matey...or what the &?#! is on my eye...
Isaak's surgery, besides being SIGNIFICANTLY more involved than we had hoped, went pretty well. This is little guy on Friday when he came home. He was grumpy and mostly very sleepy as the anesthesia worked it's way out of his system, but overall well behaved.
He went to the clinic for a followup yesterday morning to have the patch removed and make sure everything was stable. Below is a shot from the afternoon. Honestly, his eye looked much better than we expected. Up close, it looks pretty rough with substantial blood and you can see the gas bubble they injected (it looks like a bubble level for a tripod). You really can't tell that his lens is gone.
So for the next few days, we have to follow a strict regimen of 3 different eye drops (dilator, steroid and pressure) and antibiotic ointment. Some of them are applied up to 4 times a day. Fun? Not really. Though he does seem to be getting a bit better at tolerating the application.
Overnight, he gets to wear an eye patch to keep him from scratching at his eye. He's not a bad little patient at all. (Cute too).
Thursday is the follow up appointment at Duke and we'll see where we go from there.
He went to the clinic for a followup yesterday morning to have the patch removed and make sure everything was stable. Below is a shot from the afternoon. Honestly, his eye looked much better than we expected. Up close, it looks pretty rough with substantial blood and you can see the gas bubble they injected (it looks like a bubble level for a tripod). You really can't tell that his lens is gone.
So for the next few days, we have to follow a strict regimen of 3 different eye drops (dilator, steroid and pressure) and antibiotic ointment. Some of them are applied up to 4 times a day. Fun? Not really. Though he does seem to be getting a bit better at tolerating the application.
Overnight, he gets to wear an eye patch to keep him from scratching at his eye. He's not a bad little patient at all. (Cute too).
Thursday is the follow up appointment at Duke and we'll see where we go from there.
Friday, December 17, 2010
Eye Surgery, Part 2
UPDATE: Neil here - Isaak came through surgery fine and Bekka is with him in recovery. (I'm at home with Penny, long story).
So Isaak had about as much done as one could. It was a mess in his left eye. Blood vessels were dragging nerves around and growing in strange ways and there was quite a lot of scar tissue. Something had to be done or complete detachment was highly likely.
So what did they do?
Little guy has certainly had a challenging time of it in his short life. RoP rarely gets to this advanced stage these days, but in his case, too much hidden damage appears to have led to this situation. This was particularly frustrating as his eye appeared to have stabilized several time before suddenly worsening.
He's a trooper though and just keeps smiling through it all.
--------------------------------------
Isaak was taken back to the OR at 7:30 this morning. (We've been here since 6am, which meant I had to get the poor little guy out of bed at 5am.) He spent his time talking, smiling and flirting while we waited.
The retinal specialist came out to talk with me a few minutes ago. She will also be doing some additional laser ablation on Isaak's right eye as there is still some abnormal blood vessel growth. Her main concern with his left eye is that the tugging on the retina caused by the fibrous tissue could cause a hole to tear in the retina. If that happened, the vitreous fluid could get behind the retina and cause a full detachment. Full detachment would mean no functional vision in that eye.
I'll post more updates as I have time and more info.
So Isaak had about as much done as one could. It was a mess in his left eye. Blood vessels were dragging nerves around and growing in strange ways and there was quite a lot of scar tissue. Something had to be done or complete detachment was highly likely.
So what did they do?
- Removed the lens (he will wear a contact lens from here forward)
- Cut most of the scar and fibrous tissue pulling on his retina. They were not able to get to all of it, but were able to to get to most.
- Placed a scleral buckle around the eye. This helps to relieve tension on the retina. It might be permanent but will be in place for years in any case. It will have to be periodically loosened to allow for growth.
- Performed more laser surgery in his right eye. A couple of areas had started showing abnormal blood vessel growth. Unfortunately, RoP is a lifelong disease and we will have to stay on top of this. Overall his right eye is still doing really well.
Little guy has certainly had a challenging time of it in his short life. RoP rarely gets to this advanced stage these days, but in his case, too much hidden damage appears to have led to this situation. This was particularly frustrating as his eye appeared to have stabilized several time before suddenly worsening.
He's a trooper though and just keeps smiling through it all.
--------------------------------------
Isaak was taken back to the OR at 7:30 this morning. (We've been here since 6am, which meant I had to get the poor little guy out of bed at 5am.) He spent his time talking, smiling and flirting while we waited.
The retinal specialist came out to talk with me a few minutes ago. She will also be doing some additional laser ablation on Isaak's right eye as there is still some abnormal blood vessel growth. Her main concern with his left eye is that the tugging on the retina caused by the fibrous tissue could cause a hole to tear in the retina. If that happened, the vitreous fluid could get behind the retina and cause a full detachment. Full detachment would mean no functional vision in that eye.
I'll post more updates as I have time and more info.
Wednesday, December 15, 2010
So Long TPN – Don’t let the door hit you on the way out!
First the good: Today is Isaak’s last day on TPN! His Broviac catheter will be left in place for another month in case we have to backtrack and put him back on some sort of IV, but we are thinking positively on this one. He’s done very well on the low volume over the last week. Until removal, we will only have to flush the line daily and change the clave/connector twice a week
In news almost as exciting, he will now have a 4 hour gap in continuous feeds. He’s getting the same volume through his g-tube but over 20 hours instead of 24. This means we have 4 hours of a cordless baby! This is going to be a good thing for Isaak and mommy and daddy.
Both of the little guys continue to grow at an astounding rate. On Monday, Isaak weighed in at 14lbs even and Penny at 15 lbs 4oz. Amazing. Isaak has really taken off since they began allowing us to feed him on demand and Penny just keeps on trucking. She is such a chubby monkey now with little leg rolls and arm rolls and the biggest cheeks you have ever seen. We’ll have to get some diaper only pictures soon for the world to see ;)
Now the not so good: Isaak had a physical therapy evaluation on Monday. They were very happy with the neuromuscular side of things and he seems to be developing fine motor control reasonably well (such as passing an object from hand to hand) – BUT – his gross motor skills are lagging. That would include head control and attempting to sit up or roll over. We have certainly noticed a gap compared to his sister and mentioned as much during the SICC visit. As such, we’ll be looking at getting weekly PT visits to help him along as well as focusing our attention on helping him work towards goals.
We think that some of this may be because he just hasn’t had the same opportunities as his sister. He’s been hooked up to IVs and feeding tubes so much that our interaction has been more limited and we’ve been unable to hold him or place him in certain positions. Now that he is cordless for a few hours it will be much easier to work with him. We have no idea at this point if this anything other than developmental lag. We really hope so.
Now the downright bad: Isaak had an eye exam last Thursday and the results were not encouraging for his left eye. When last we visited Duke Eye Center, we thought everything was going to be pretty stable but the doctors let us know that nothing was predictable in these situations. It now appears that additional fibrous tissue is growing around the retina and is causing more tugging, greatly increasing the risk of full detachment.
We may have reached a point where surgical intervention will be required to try to preserve the vision he has in that eye. On Friday (12/17), he will be undergoing a detailed exam under anesthesia, and depending on the results, they will progress immediately to surgery. If surgery is necessary, odds are good that he will lose the lens in his left eye and will have to wear a contact lens to protect it and allow proper focusing.
The left has been of great concern since a massive hemorrhage back in the summer. It appeared that it had cleared up and stabilized but apparently damage was caused that might have been behind the retina and this has led to the continued problems. No question this is a big disappointment. Little guy has seen enough of OR for a lifetime, much less for a baby not even 8 months old yet.
On the plus side, his right eye is doing really well and is essentially mature.
That's it for now (quite a lot, really) and we'll have more information on Friday regarding surgery (or hopefully lack thereof).
Wednesday, October 13, 2010
Isaak's Eyeballs Open Post
Good morning!
We'll keep this open with occasional updates today. Right now (8:35), we are finished with preop and waiting for them to take Isaak back. He's currently asleep in Bekka's arms so I'd classify that as doing OK ;)
To recap: They will be conducting a detailed exam of both eyes while he is under anesthesia. More than likely, they will perform laser ablation surgery on his right eye to help with the RoP issues and to direct retina development into a more normal pattern. Based on the exam, they may also laser areas in the left eye in the hopes of stabilizing the situation and salvaging as much vision as possible. We'll have a much better idea where we stand.
Update (10:00am): We just met with the retinal specialist. The news confirms the pre-op diagnoses. The right eye looks healthy, if a bit underdeveloped for his age. The surgeon is in the process of lasering that eye to dry up a couple of small bleeds to prevent them from expanding and keep his right eye on track.
The left was, if anything, a bit worse than anticipated. They were able to conduct a much more detailed scan of the eye which showed how large the fold was and indicated that there is definite retinal detachment at the center andin a line across the eye back towards the nose. (Ok, had that backwards, it's actually towards the outside of the eye. He is going to have decent outer vision because the inside of the eye is what looks out.)
This is apparently classic stage 4-B RoP. Most of the periphery of the retina is attached, and he should have good outside peripheral vision. The doctor indicated that were this an older person who had developed the same problem, they would almost certainly have performed surgery. In the case of Isaak, this has been going on long enough that he has not developed the neural pathways to learn to see, and the risk associated with cutting the eye open and possibly having to take out the lens is not worth it. We do not know for sure if they are going to laser anything on that side.
Interestingly, he will have to have glasses as he gets mobile mostly to protect his very valuable right eye.We'll have more after meeting with the surgeon.
Update (11:00am): Just met with the surgeon. Everything went swimmingly. His right eye looked good and she hit a few spots of concern (but nothing dire) with the laser. She was very happy with the vascular development in the left eye outside of the folded area and only hit a couple of spots there. She confirmed that both she and the retinal specialist concurred that surgery on the left eye carried far more risk than benefit, especially considering how well attached and developed the unaffected retina is. We will see her again a week from Monday for a follow-up. In the meantime, we apply two different types of eye drops for the next 5 days. That is pretty much it for post-op care.
Bekka is back in recovery with Isaak and I'm waiting for them to move to a normal post-op spot so I can join. After that, we'll wait while they find us a spot in the main hospital tower and go from there. His stay in the hospital is strictly to observe for any lingering effects of anesthesia, from an eye standpoint, he is good to go.
Update (Afternoon): Little guy is happily ensconced in a room on the 5th floor at Duke. Once he was awake, you've never seen a baby so eager to get a bottle of milk! Poor guy had not had formula or g-tube feeds since midnight, only some pedialyte overnight (just like grownups and anesthesia, he couldn't eat). This afternoon, he's mostly been napping. I'm sure the stress of the surgery plus the lingering effects of being put under have zapped him but good.
Assuming no issues, we'll be outta here first thing in the morning.
We'll keep this open with occasional updates today. Right now (8:35), we are finished with preop and waiting for them to take Isaak back. He's currently asleep in Bekka's arms so I'd classify that as doing OK ;)
To recap: They will be conducting a detailed exam of both eyes while he is under anesthesia. More than likely, they will perform laser ablation surgery on his right eye to help with the RoP issues and to direct retina development into a more normal pattern. Based on the exam, they may also laser areas in the left eye in the hopes of stabilizing the situation and salvaging as much vision as possible. We'll have a much better idea where we stand.
Update (10:00am): We just met with the retinal specialist. The news confirms the pre-op diagnoses. The right eye looks healthy, if a bit underdeveloped for his age. The surgeon is in the process of lasering that eye to dry up a couple of small bleeds to prevent them from expanding and keep his right eye on track.
The left was, if anything, a bit worse than anticipated. They were able to conduct a much more detailed scan of the eye which showed how large the fold was and indicated that there is definite retinal detachment at the center and
This is apparently classic stage 4-B RoP. Most of the periphery of the retina is attached, and he should have good outside peripheral vision. The doctor indicated that were this an older person who had developed the same problem, they would almost certainly have performed surgery. In the case of Isaak, this has been going on long enough that he has not developed the neural pathways to learn to see, and the risk associated with cutting the eye open and possibly having to take out the lens is not worth it. We do not know for sure if they are going to laser anything on that side.
Interestingly, he will have to have glasses as he gets mobile mostly to protect his very valuable right eye.We'll have more after meeting with the surgeon.
Update (11:00am): Just met with the surgeon. Everything went swimmingly. His right eye looked good and she hit a few spots of concern (but nothing dire) with the laser. She was very happy with the vascular development in the left eye outside of the folded area and only hit a couple of spots there. She confirmed that both she and the retinal specialist concurred that surgery on the left eye carried far more risk than benefit, especially considering how well attached and developed the unaffected retina is. We will see her again a week from Monday for a follow-up. In the meantime, we apply two different types of eye drops for the next 5 days. That is pretty much it for post-op care.
Bekka is back in recovery with Isaak and I'm waiting for them to move to a normal post-op spot so I can join. After that, we'll wait while they find us a spot in the main hospital tower and go from there. His stay in the hospital is strictly to observe for any lingering effects of anesthesia, from an eye standpoint, he is good to go.
Update (Afternoon): Little guy is happily ensconced in a room on the 5th floor at Duke. Once he was awake, you've never seen a baby so eager to get a bottle of milk! Poor guy had not had formula or g-tube feeds since midnight, only some pedialyte overnight (just like grownups and anesthesia, he couldn't eat). This afternoon, he's mostly been napping. I'm sure the stress of the surgery plus the lingering effects of being put under have zapped him but good.
Assuming no issues, we'll be outta here first thing in the morning.
Tuesday, October 12, 2010
Isaak's Eyes are not Smiling Today
Yesterday, we received tough news regarding Isaak. His left eye has sustained damage that likely means he will have little or no central vision in that eye. With a little luck, he will have peripheral vision but that depends on how development occurs and whether the damage progresses.
Last week, his weekly eye exam revealed a fold in the retina of the left eye. This was new, and the doctor in Raleigh immediately scheduled a visit to the Duke Eye Center. We had that visit yesterday and the doctor indicated that the fold went from the outer edge of the retina into the macula. The fold is essentially a ridge of blood vessels and scar tissue that have pulled the retina up.
The macula is critical to central vision (you may be familiar with the condition of macular degeneration). It appears there really is nothing they can do to guarantee improved vision in the eye without putting the overall health of the eye at even greater risk. You also have to take into account the risk of 2+ hours under anesthesia for any potential procedure given his relatively delicate state and young age. If his right eye was also in equally bad shape, they might recommend taking the risks involved to try and salvage more vision.
His left eye has been more problematic from the beginning, and he experienced a large hemorrhage a couple of months ago. It's not unlikely that whatever caused the hemorrhage event led to this situation.
The right eye is doing reasonably well. However, he still shows signs of Stage 3 RoP, and that is concerning at this late age. To that end, they have scheduled a detailed eye exam under anesthesia with likely laser ablation surgery. It's also quite possible they will perform laser surgery on the left eye to help reduce the likelihood of total vision loss. This is scheduled for Wednesday (10/13). Time under anesthesia is pretty short for these procedures (vs. full-on surgery).
Yep, that's tomorrow. Life moves fast when you have preemies.
We cannot lie: This sucks.
Isaak has some of the biggest, most soulful eyes we've seen this side of Ollie and he's been through so much already. It is terrible that this is happening to him on top of everything else. Unfortunately, he seems to be following the path that many boy preemies take: That of most difficulty.
Last week, his weekly eye exam revealed a fold in the retina of the left eye. This was new, and the doctor in Raleigh immediately scheduled a visit to the Duke Eye Center. We had that visit yesterday and the doctor indicated that the fold went from the outer edge of the retina into the macula. The fold is essentially a ridge of blood vessels and scar tissue that have pulled the retina up.
The macula is critical to central vision (you may be familiar with the condition of macular degeneration). It appears there really is nothing they can do to guarantee improved vision in the eye without putting the overall health of the eye at even greater risk. You also have to take into account the risk of 2+ hours under anesthesia for any potential procedure given his relatively delicate state and young age. If his right eye was also in equally bad shape, they might recommend taking the risks involved to try and salvage more vision.
His left eye has been more problematic from the beginning, and he experienced a large hemorrhage a couple of months ago. It's not unlikely that whatever caused the hemorrhage event led to this situation.
Yep, that's tomorrow. Life moves fast when you have preemies.
We cannot lie: This sucks.
Isaak has some of the biggest, most soulful eyes we've seen this side of Ollie and he's been through so much already. It is terrible that this is happening to him on top of everything else. Unfortunately, he seems to be following the path that many boy preemies take: That of most difficulty.
Sunday, July 18, 2010
The Latest and Greatest from the Land of Light Blue
Today we have a mixed bag of news to report but overall things are going well. The only real negatives are Isaak's retention of fluid and the fact the little guy hasn't gotten to eat yet. It had really seemed that today would be the day they would resume light feeds via g-tube, but it was not to be. During his evaluation this morning, the surgeon thought he was a little too distended in the abdomen, so the little guy is still NPO. He received a dose of Lasix this evening and everyone is hoping this helps him finally get rid of the extra fluid he has carried since surgery and by extension make it more likely he eats tomorrow! The worst part for mommy and me is that he decided today was the day he would get mad when he was hungry. You can tell he is feeling much better and is more energetic. He was using this new found energy to get very angry and squall away if one did not keep the paci firmly in place. It breaks your heart, it really does.
In very positive news in Isaak's world, he spent the entire day sans supplemental oxygen. He has tried this a couple of times before but it sure seems that this attempt is more serious. It would be a big milestone if he can keep it up. His sister is entering her second week without supplemental support.
Miss Penny is doing quite well. Bekka is attempting to nurse her 2-4 times a day. She is now consistently eating more than 50% of the required feed volume with each attempt and sometimes eats the full amount. What she doesn't eat they make up for via the NG tube. This is really her last milestone. Once she is feeding exclusively by nursing and/or bottle AND gaining weight, she'll be ready to try the car seat test and hopefully begin living with mommy and daddy. Doesn't seem real in some ways. This is my 1lb 7oz girl here!
Speaking of weights, they both continue to trend up. Penny has plateaued a bit, but was at 2551g last night (no weight yet this evening for either of them). That translates to 5lb 10oz, almost 4 times her birth weight. Isaak's weight is in flux. He weighed in at 2750g last night (6lb 1oz) but that number is likely way too high due to the fluid retention. We'd really like to see him drop about 100g at tonight's assessment.
I know we haven't posted much in the way of pics lately, but we have a ton and I will try to take care of that this week. That is all to report for now. Hopefully the next time one of us posts an update, Isaak will be progressing nicely with his feeds.
In very positive news in Isaak's world, he spent the entire day sans supplemental oxygen. He has tried this a couple of times before but it sure seems that this attempt is more serious. It would be a big milestone if he can keep it up. His sister is entering her second week without supplemental support.
Miss Penny is doing quite well. Bekka is attempting to nurse her 2-4 times a day. She is now consistently eating more than 50% of the required feed volume with each attempt and sometimes eats the full amount. What she doesn't eat they make up for via the NG tube. This is really her last milestone. Once she is feeding exclusively by nursing and/or bottle AND gaining weight, she'll be ready to try the car seat test and hopefully begin living with mommy and daddy. Doesn't seem real in some ways. This is my 1lb 7oz girl here!
Speaking of weights, they both continue to trend up. Penny has plateaued a bit, but was at 2551g last night (no weight yet this evening for either of them). That translates to 5lb 10oz, almost 4 times her birth weight. Isaak's weight is in flux. He weighed in at 2750g last night (6lb 1oz) but that number is likely way too high due to the fluid retention. We'd really like to see him drop about 100g at tonight's assessment.
I know we haven't posted much in the way of pics lately, but we have a ton and I will try to take care of that this week. That is all to report for now. Hopefully the next time one of us posts an update, Isaak will be progressing nicely with his feeds.
Thursday, July 15, 2010
Penny and Isaak - Together Again (again)
No pics available, but Penny was transported to UNC this afternoon. Thanks so much to our friends at WakeMed for taking care of our little guys for so long. We wish we were able to finish our stay there, but little girl has to nurse and Isaak has to be where he is to get the GI care he needs. We had a wonderful stay and could not have asked for kinder, gentler care of both our babies and ourselves.
In big news, Isaak was successfully extubated today. He wasn't really all that happy about it and was initially on a fairly high CPAP pressure and O2 level. (Just a nasal cannula was not going to be sufficient for him given the issue he was having riding the vent). However, when the surgeon came by for a visit, he suggested they remove the vacuum tube from his esophagus and vent his stomach as needed through his g-tube.
That did two things: 1) Royally ticked him off and 2) Took a fairly large obstacle out of his throat. Since then, they have been able to gradually reduce his O2 levels. They also restarted caffeine to get him through the next few days and assist with the breathing and heart rate. We'll be watching for improvement.
Otherwise, he is doing pretty well. His abdomen is a little swollen and red, but the surgeon was not overly concerned and indicated it looked normal. After all, he's had pretty major slicing and dicing down there. Now we anxiously await the first bowel sounds so that he can begin getting limited amounts orally. He's a tough little guy.
In big news, Isaak was successfully extubated today. He wasn't really all that happy about it and was initially on a fairly high CPAP pressure and O2 level. (Just a nasal cannula was not going to be sufficient for him given the issue he was having riding the vent). However, when the surgeon came by for a visit, he suggested they remove the vacuum tube from his esophagus and vent his stomach as needed through his g-tube.
That did two things: 1) Royally ticked him off and 2) Took a fairly large obstacle out of his throat. Since then, they have been able to gradually reduce his O2 levels. They also restarted caffeine to get him through the next few days and assist with the breathing and heart rate. We'll be watching for improvement.
Otherwise, he is doing pretty well. His abdomen is a little swollen and red, but the surgeon was not overly concerned and indicated it looked normal. After all, he's had pretty major slicing and dicing down there. Now we anxiously await the first bowel sounds so that he can begin getting limited amounts orally. He's a tough little guy.
Tuesday, July 13, 2010
The only constant is change...
Isaak's surgery has been moved up. We're on our way to the hospital now. He'll likely go back around 9:30-ish.
Surgery Day is Here
Today is Isaak's big day. The little fella is scheduled for 3 surgical procedures.
Yes, it's a lot for such a tiny guy to go through but there is a reason for it all.
The reanastomosis is obviously the big one. An upper and lower GI contrast dye study was conducted today and the results were encouraging. Isaak had no visible strictures. Now the big question is will everything be healthy when they open him up. They may have to do small resections at the ends of the remaining intestinal tissue to make sure they are connecting the healthiest, most viable tissue back together.
The Broviac Catheter will allow the continuation of parenteral nutrition and is typically easier to maintain, longer lasting and with fewer infections than the PICC lines they have been using so far. It is almost certain he will need to continue parenteral nutrition for weeks to months to help him continue to grow while his gut adapts and develops.
The g-tube. That's a tough one. We really struggled with that decision as waves of memories of Ollie came crashing down with each discussion. In the end, conversations with doctors at both UNC and WakeMed helped convince us it was the best course for Isaak. With a g-tube in place, they can feed him continuously and help encourage bowel development, but without the potential negative assocations that might occur with the use of an OG or NG tube for an extended period. He'll still be able to eat orally, but they can increase the quantity and spread out the feeds using the g-tube. All in all, he should get home earlier this way and have a better outcome to boot.
If we are very lucky, the g-tube combined with oral feeds might mean he can go home sans TPN, but it's not likely. He will most likely be getting a mix of enteral and parenteral nutrition for some time to come. Gradually, his gut should adapt and he'll go off the TPN. This would be good for his liver as extended use of parenteral nutrition places a strain on multiple organs.
Surgery is scheduled between 10 and 1. Really, it's like the cable guy or something. The surgeon has several smaller cases he wants to finish up in the morning before taking on Isaak's. He'll be in good hands.
We will have a single running post tomorrow to keep the world up to speed as we know something. He was sleeping very peacefully this evening so hopefully he gets a good night's rest. Something I'm about to try to do.
Penny is doing well. We are trying to get her to UNC so Bekka can nurse. The more she can do that, the faster Penny will get home. She really is so close. She needs to desat a little less and move to completely oral feeds.
Both of the little guys seem so big now. Isaak cracked 2500g tonight (5.5 lbs) and Penny is just under 2400g (5lbs 5oz). He's 17.5 inches long and she is just over 16.5. It's amazing to look at these chunky little monkeys and think about where we were 73 days ago. We were so worried about getting him to even 1800g a few weeks ago. Those guys at WakeMed did a great job of fattening him up!
- Reanastomosis of his upper and lower intestines and repair of his ostomy
- A Broviac Catheter (smaller version of a Hickman Line).
- Placement of a g-tube, likely with a Mic-Key button
Yes, it's a lot for such a tiny guy to go through but there is a reason for it all.
The reanastomosis is obviously the big one. An upper and lower GI contrast dye study was conducted today and the results were encouraging. Isaak had no visible strictures. Now the big question is will everything be healthy when they open him up. They may have to do small resections at the ends of the remaining intestinal tissue to make sure they are connecting the healthiest, most viable tissue back together.
The Broviac Catheter will allow the continuation of parenteral nutrition and is typically easier to maintain, longer lasting and with fewer infections than the PICC lines they have been using so far. It is almost certain he will need to continue parenteral nutrition for weeks to months to help him continue to grow while his gut adapts and develops.
The g-tube. That's a tough one. We really struggled with that decision as waves of memories of Ollie came crashing down with each discussion. In the end, conversations with doctors at both UNC and WakeMed helped convince us it was the best course for Isaak. With a g-tube in place, they can feed him continuously and help encourage bowel development, but without the potential negative assocations that might occur with the use of an OG or NG tube for an extended period. He'll still be able to eat orally, but they can increase the quantity and spread out the feeds using the g-tube. All in all, he should get home earlier this way and have a better outcome to boot.
If we are very lucky, the g-tube combined with oral feeds might mean he can go home sans TPN, but it's not likely. He will most likely be getting a mix of enteral and parenteral nutrition for some time to come. Gradually, his gut should adapt and he'll go off the TPN. This would be good for his liver as extended use of parenteral nutrition places a strain on multiple organs.
Surgery is scheduled between 10 and 1. Really, it's like the cable guy or something. The surgeon has several smaller cases he wants to finish up in the morning before taking on Isaak's. He'll be in good hands.
We will have a single running post tomorrow to keep the world up to speed as we know something. He was sleeping very peacefully this evening so hopefully he gets a good night's rest. Something I'm about to try to do.
Penny is doing well. We are trying to get her to UNC so Bekka can nurse. The more she can do that, the faster Penny will get home. She really is so close. She needs to desat a little less and move to completely oral feeds.
Both of the little guys seem so big now. Isaak cracked 2500g tonight (5.5 lbs) and Penny is just under 2400g (5lbs 5oz). He's 17.5 inches long and she is just over 16.5. It's amazing to look at these chunky little monkeys and think about where we were 73 days ago. We were so worried about getting him to even 1800g a few weeks ago. Those guys at WakeMed did a great job of fattening him up!
Friday, July 9, 2010
Improvements and Departures
Well, let's start with the good news, shall we?
Isaak's transfusions helped him tremendously. His skin tone became nice and pink again. His breathing improved. His temperature and its regulation also improved. And his blood tests? They grew nothing - no bacteria and no fungus. CRP levels dropped. So they've stopped the antibiotics, antifungal and caffeine. He is on heated and humidified oxygen (at 21% or room air concentrations) at a flow rate of 1 lpm. (As Neil would say, Isaak likes the "wall juice.") He also ditched the isolette (again).
Penny remains sans respiratory support. And it is SO much easier to get her out of the crib. She has occasional desats but usually recovers quickly on her own. A few times she's been given blow-by oxygen (another phrase we learned with Ollie and had hoped never to use again.) They've slowly gotten her back to full feeds (about 45ml) - her first full feed will be given tonight at 11pm. And we've been working on breastfeeding. Each time she does better than the last time. It's not an exact science figuring out how much she's gotten, but we're fairly certain that she got about 40ml when she nursed at 5:30pm today. On the whole, though, she's doing really well.
Isaak's surgery is Tuesday. While we're excited that he's going to get reconnected, it's scary to think of him going under the knife...again. Before Isaak was back-transferred to WakeMed, the surgeon mentioned that we should think about having a g-tube put in at the same time as the reconnect. With a g-tube, Isaak could get continuous feeds overnight. (Gee, there are a couple more phrases we'd hoped to never use again.) The goal of doing continuous feeds is to maximize the adaptation of the bowels.
In preparation for his surgery date, Isaak will be transferred to UNC on Sunday. And, if there is space available, Penny will, too. We are very sad to leave our ICN family at WakeMed. This was a hard decision, but things will be stressful enough without the added stress of children in different hospitals.
Speaking of hard decisions and stressful situations...
It's coming. Ollie's first angel anniversary on August 3rd and what would have been his second birthday, August 5th. Neil and I have both been talking about where we were this time last year. July 4th of last year we were at the ER with Oliver and I had just broken both elbows. July 7th, 8th and 9th of last year we decided (again) that bipap was not for us and left the PICU at Duke. July 19th of last year we made our last trip to the ER with Ollie - we knew our time with him was growing very short. And August 3rd of last year...he was gone.
We love you, Ollie Bear! And we still miss you terribly.
Isaak's transfusions helped him tremendously. His skin tone became nice and pink again. His breathing improved. His temperature and its regulation also improved. And his blood tests? They grew nothing - no bacteria and no fungus. CRP levels dropped. So they've stopped the antibiotics, antifungal and caffeine. He is on heated and humidified oxygen (at 21% or room air concentrations) at a flow rate of 1 lpm. (As Neil would say, Isaak likes the "wall juice.") He also ditched the isolette (again).
Penny remains sans respiratory support. And it is SO much easier to get her out of the crib. She has occasional desats but usually recovers quickly on her own. A few times she's been given blow-by oxygen (another phrase we learned with Ollie and had hoped never to use again.) They've slowly gotten her back to full feeds (about 45ml) - her first full feed will be given tonight at 11pm. And we've been working on breastfeeding. Each time she does better than the last time. It's not an exact science figuring out how much she's gotten, but we're fairly certain that she got about 40ml when she nursed at 5:30pm today. On the whole, though, she's doing really well.
Isaak's surgery is Tuesday. While we're excited that he's going to get reconnected, it's scary to think of him going under the knife...again. Before Isaak was back-transferred to WakeMed, the surgeon mentioned that we should think about having a g-tube put in at the same time as the reconnect. With a g-tube, Isaak could get continuous feeds overnight. (Gee, there are a couple more phrases we'd hoped to never use again.) The goal of doing continuous feeds is to maximize the adaptation of the bowels.
In preparation for his surgery date, Isaak will be transferred to UNC on Sunday. And, if there is space available, Penny will, too. We are very sad to leave our ICN family at WakeMed. This was a hard decision, but things will be stressful enough without the added stress of children in different hospitals.
Speaking of hard decisions and stressful situations...
It's coming. Ollie's first angel anniversary on August 3rd and what would have been his second birthday, August 5th. Neil and I have both been talking about where we were this time last year. July 4th of last year we were at the ER with Oliver and I had just broken both elbows. July 7th, 8th and 9th of last year we decided (again) that bipap was not for us and left the PICU at Duke. July 19th of last year we made our last trip to the ER with Ollie - we knew our time with him was growing very short. And August 3rd of last year...he was gone.
We love you, Ollie Bear! And we still miss you terribly.
Friday, May 21, 2010
Update on Isaak's Surgery
Today was a very tough day. Our little boy had to go under the knife and we didn't know what the outcome would be. Unfortunately, it was neither as simple nor as positive as we'd hoped.
It turns out that Isaak was indeed suffering from NEC. It had the courtesy to wall itself off from the rest of his body such that no air leaks had ever occurred to tip them off on the x-ray. When the surgeons opened him him up, they saw white intestines - a sure sign that the tissue was dead.
In the end, they removed over 50% of his intestinal track above his colon.
The good news (!?!) is that his colon was not affected and neither were his uppermost small intestines. They also had to perform an ostomy to allow his bowel the time and environment to heal. In 7-10 days, if he's doing well, he will begin receiving small amounts of food and they will monitor how it looks when it passes out of the ostomy. In a few weeks, they will reconnect his upper and lower intestines and hope that all goes well. Before all of that, the first order of business will be keeping him comfortable and infection free over the next few days. Bowel surgery is always risky and even more so when you are talking about a micro-preemie.
Isaak is currently heavily sedated (and will be for several days) but was alert enough to open up an eye and look at his mommy while she was holding his hand. He is still on a ventilator, but they are looking at lowering his setting as his lungs are no longer being compressed by his guts. I have to say that he certainly looks a lot more comfortable than he did the last few days before the procedure. These are small things, but they are the things at which we grasp.
The surgeons are confident they removed all of the necrotized tissue. The scary thing is there is no guarantee that it won't come back. The chances aren't really high, but NEC is very poorly understood. Apparently, in terms of the likelihood of a recurrence, it is better that they operate after the necrosis has essentially stabilized than to do it too early.
The long term prognosis really is a mystery. In some ways it was good that this happened at such an early gestational age as the body has amazing ways of adapting and repairing itself. It's unknown if he will be able to absorb enough nutrition from strictly oral intake in the relatively near term. There is a chance he could leave the hospital in a few weeks only receiving oral food, there is chance he might need oral AND IV nutrition (likely I think) and there is chance that he will be strictly IV. The hope is that things improve gradually and consistently. During normal gestation, much of the growth in the bowels occurs in the last trimester. Hopefully he gets an extra shot of growth with what he has left.
I will not lie, this has been extraordinarily difficult for Bekka and myself. We have been through so many things in the last two years with Oliver and now these little guys. This ranks up there as one of the toughest days we've ever had. To be this powerless as a parent and to see such a tiny little baby in so much distress is inconceivably heart-wrenching. No one ever said that being a parent would be easy, but I'll be damned if we expected it to be this hard.
We love you Isaak.
It turns out that Isaak was indeed suffering from NEC. It had the courtesy to wall itself off from the rest of his body such that no air leaks had ever occurred to tip them off on the x-ray. When the surgeons opened him him up, they saw white intestines - a sure sign that the tissue was dead.
In the end, they removed over 50% of his intestinal track above his colon.
The good news (!?!) is that his colon was not affected and neither were his uppermost small intestines. They also had to perform an ostomy to allow his bowel the time and environment to heal. In 7-10 days, if he's doing well, he will begin receiving small amounts of food and they will monitor how it looks when it passes out of the ostomy. In a few weeks, they will reconnect his upper and lower intestines and hope that all goes well. Before all of that, the first order of business will be keeping him comfortable and infection free over the next few days. Bowel surgery is always risky and even more so when you are talking about a micro-preemie.
Isaak is currently heavily sedated (and will be for several days) but was alert enough to open up an eye and look at his mommy while she was holding his hand. He is still on a ventilator, but they are looking at lowering his setting as his lungs are no longer being compressed by his guts. I have to say that he certainly looks a lot more comfortable than he did the last few days before the procedure. These are small things, but they are the things at which we grasp.
The surgeons are confident they removed all of the necrotized tissue. The scary thing is there is no guarantee that it won't come back. The chances aren't really high, but NEC is very poorly understood. Apparently, in terms of the likelihood of a recurrence, it is better that they operate after the necrosis has essentially stabilized than to do it too early.
The long term prognosis really is a mystery. In some ways it was good that this happened at such an early gestational age as the body has amazing ways of adapting and repairing itself. It's unknown if he will be able to absorb enough nutrition from strictly oral intake in the relatively near term. There is a chance he could leave the hospital in a few weeks only receiving oral food, there is chance he might need oral AND IV nutrition (likely I think) and there is chance that he will be strictly IV. The hope is that things improve gradually and consistently. During normal gestation, much of the growth in the bowels occurs in the last trimester. Hopefully he gets an extra shot of growth with what he has left.
I will not lie, this has been extraordinarily difficult for Bekka and myself. We have been through so many things in the last two years with Oliver and now these little guys. This ranks up there as one of the toughest days we've ever had. To be this powerless as a parent and to see such a tiny little baby in so much distress is inconceivably heart-wrenching. No one ever said that being a parent would be easy, but I'll be damned if we expected it to be this hard.
We love you Isaak.
Thursday, May 20, 2010
(Hopefully) No Surgery for Isaak
So, Isaak's transfer to UNC was pretty painless. That's not to say that it is easy having Isaak at UNC and Penny at WakeMed. Or that it's easy to see Isaak so sick. It is most definitely *not* easy.
Isaak's x-rays have not shown any changes. Nothing has worsened, but nothing has improved either. His bloodwork and clinical symptoms point to NEC, or "neck" in medical parlance for Necrotizing Enterocolitis. Sadly, Isaak certainly had a lot of the risk factors for NEC. And this is not the diagnosis we wanted. It is very serious and they will be closely monitoring him. X-rays and bloodwork will be done every 6 hours (at 2am, 8am, 2pm and 8pm).
Right now, since he does not have a bowel perforation, he will not be having surgery. However, he will be examined by the surgical staff in the event he does need surgery. The plan, though, is to treat him with antibiotics and continue the "watchful waiting" that we have become so good at. (Not that we ever wanted to be this good at it. Sigh.)
The doctor placed an arterial line shortly after Isaak arrived so that they can monitor his blood pressure in "real-time" and so they don't have to stick him every 6 hours for blood. And since he'll be having lots of blood drawn for bloodwork, we anticipate more blood transfusions. Again, this is fairly normal and expected with sick preemies.
Neil and I both noted today that the poor little guy is more lethargic than he was yesterday. We can tell that he's tired and just plain wiped out. He's letting the vent do most of the work for him. Only occasionally does he actually breathe "over" the vent - taking more than the 30 or 40 breaths per minute that the vent is giving him.
Isaak's little belly is taut and shiny and reddish. It looks uncomfortable. We both commented today that he reminds us of Ollie right now. Because his tummy is so distended, his chest and abdomen have that bell shape that became so familiar. And his hair has that same reddish-blonde hue as his big brother's.
Talking about those similarities today brought tears to my eyes. I think this is the first time since I was admitted to the hospital in early April that I have let my emotions have the better of me. It won't likely be the last.
I never would have expected that all three of my children - my two sons and my daughter - would have to fight so hard to live and breathe.
Please keep praying for Isaak and Penny.
Isaak's x-rays have not shown any changes. Nothing has worsened, but nothing has improved either. His bloodwork and clinical symptoms point to NEC, or "neck" in medical parlance for Necrotizing Enterocolitis. Sadly, Isaak certainly had a lot of the risk factors for NEC. And this is not the diagnosis we wanted. It is very serious and they will be closely monitoring him. X-rays and bloodwork will be done every 6 hours (at 2am, 8am, 2pm and 8pm).
Right now, since he does not have a bowel perforation, he will not be having surgery. However, he will be examined by the surgical staff in the event he does need surgery. The plan, though, is to treat him with antibiotics and continue the "watchful waiting" that we have become so good at. (Not that we ever wanted to be this good at it. Sigh.)
The doctor placed an arterial line shortly after Isaak arrived so that they can monitor his blood pressure in "real-time" and so they don't have to stick him every 6 hours for blood. And since he'll be having lots of blood drawn for bloodwork, we anticipate more blood transfusions. Again, this is fairly normal and expected with sick preemies.
Neil and I both noted today that the poor little guy is more lethargic than he was yesterday. We can tell that he's tired and just plain wiped out. He's letting the vent do most of the work for him. Only occasionally does he actually breathe "over" the vent - taking more than the 30 or 40 breaths per minute that the vent is giving him.
Isaak's little belly is taut and shiny and reddish. It looks uncomfortable. We both commented today that he reminds us of Ollie right now. Because his tummy is so distended, his chest and abdomen have that bell shape that became so familiar. And his hair has that same reddish-blonde hue as his big brother's.
Talking about those similarities today brought tears to my eyes. I think this is the first time since I was admitted to the hospital in early April that I have let my emotions have the better of me. It won't likely be the last.
I never would have expected that all three of my children - my two sons and my daughter - would have to fight so hard to live and breathe.
Please keep praying for Isaak and Penny.
Thursday, May 13, 2010
Transfusions, PDAs, and tough days for Isaak
First off - I know we don't talk about her much, but Penny is doing great. (Which is why she doesn't get as much press coverage in this blog). Little girls often do very well as preemies and she appears to be no exception. We just need her to drag her little brother back onto the program! You'll want to check out the new pics before proceeding because they are just so darn cute.
So Penelope is doing great but Isaak is having a rougher go of it right now. Over the last two days, his apnea and bradycardia episodes have become more frequent. They are not necessarily worse, but there definitely have been more. This led the doctors at the ICN to begin considering the possibility that Isaak had a PDA, or Patent Ductus Arteriosus. Please click the link for more details, but this is essentially a condition where a blood vessel connecting the pulmonary artery to the aorta does not close at birth. It's not uncommon at all in preterm infants and also occurs in full term babies. It places additional stress on the lungs and in some cases, like Isaak's, is asymptomatic until a week or more has gone by.
An echocardiogram conducted this afternoon appears to confirm that he has a fairly large PDA. The first treatment will be 3 doses of ibuprofen given 24 hours apart. This often works to close or greatly reduce the size of the PDA. Both of the twins received doses of indomethacin (another NSAID) when they were born in order to try to head off this very condition, but apparently in Isaak's case this wasn't quite sufficient. If the ibuprofen treatment doesn't work, the next option is surgery. It's a fairly routine procedure, but any surgery on an infant that tiny is risky (and very scary for the parents). In the meantime, we hope and pray that the ibuprofen does the trick.
Treatment with ibuprofen carries a risk of causing NEC, or Necrotizing Enterocolitis, due to the reduction of overall blood flow in the body and to the bowels in particular. Isaak has shown no symptoms of NEC so far and has processed mommy's milk well, so let's go with the positive outlook on this particular issue. They will be stopping his feeds and increasing his IV nutrition while he receives the ibuprofen as a precaution.
Finally, both of the little guys are getting transfusions over the next couple of days. You probably did not know this (we didn't), but preterm babies do not make red blood cells. Normally at this gestational age, mom would be providing everything they need, including adequate red blood cells. Their hematocrit levels have steadily fallen since birth and are now at the point they need fresh blood to help them along. THIS IS ABSOLUTELY NORMAL. It's likely they will have a few more transfusions before their bodies are ready to manufacture a supply. We really hope that this procedure will help with Isaak's bradys and apneas as the oxygen carrying capacity of his blood will greatly increase.
We've had two very good weeks with our little guys but it looks like the first setback has finally shown up. Keep sending the positive vibes and the prayers and thanks for all your support.
So Penelope is doing great but Isaak is having a rougher go of it right now. Over the last two days, his apnea and bradycardia episodes have become more frequent. They are not necessarily worse, but there definitely have been more. This led the doctors at the ICN to begin considering the possibility that Isaak had a PDA, or Patent Ductus Arteriosus. Please click the link for more details, but this is essentially a condition where a blood vessel connecting the pulmonary artery to the aorta does not close at birth. It's not uncommon at all in preterm infants and also occurs in full term babies. It places additional stress on the lungs and in some cases, like Isaak's, is asymptomatic until a week or more has gone by.
An echocardiogram conducted this afternoon appears to confirm that he has a fairly large PDA. The first treatment will be 3 doses of ibuprofen given 24 hours apart. This often works to close or greatly reduce the size of the PDA. Both of the twins received doses of indomethacin (another NSAID) when they were born in order to try to head off this very condition, but apparently in Isaak's case this wasn't quite sufficient. If the ibuprofen treatment doesn't work, the next option is surgery. It's a fairly routine procedure, but any surgery on an infant that tiny is risky (and very scary for the parents). In the meantime, we hope and pray that the ibuprofen does the trick.
Treatment with ibuprofen carries a risk of causing NEC, or Necrotizing Enterocolitis, due to the reduction of overall blood flow in the body and to the bowels in particular. Isaak has shown no symptoms of NEC so far and has processed mommy's milk well, so let's go with the positive outlook on this particular issue. They will be stopping his feeds and increasing his IV nutrition while he receives the ibuprofen as a precaution.
Finally, both of the little guys are getting transfusions over the next couple of days. You probably did not know this (we didn't), but preterm babies do not make red blood cells. Normally at this gestational age, mom would be providing everything they need, including adequate red blood cells. Their hematocrit levels have steadily fallen since birth and are now at the point they need fresh blood to help them along. THIS IS ABSOLUTELY NORMAL. It's likely they will have a few more transfusions before their bodies are ready to manufacture a supply. We really hope that this procedure will help with Isaak's bradys and apneas as the oxygen carrying capacity of his blood will greatly increase.
We've had two very good weeks with our little guys but it looks like the first setback has finally shown up. Keep sending the positive vibes and the prayers and thanks for all your support.
Friday, March 13, 2009
Small Update
The surgeon will be out in just a few to talk with us about the surgery. We'll update you all as soon as we can.
Surgery has begun
We were informed about 10 minutes ago that Oliver's surgery has started. Thank you all so very much for your continued support and prayers!
Thursday, March 12, 2009
A bit of info about tomorrow
The surgery should last about an hour and a half. We'll go straight to the PICU (pediatric ICU) after surgery. (No recovery room visit.) Assuming all goes well, we'll spend one night in the PICU and then go to either a regular room or a "step-down" room. I'm hoping for a "step-down" room since it has a better nurse to patient ratio.
Some generic info from the Duke Children's Hospital website:
Please continue to pray for a successful surgery with no complications and a quick recovery!
Some generic info from the Duke Children's Hospital website:
Please continue to pray for a successful surgery with no complications and a quick recovery!
Surgery Time is 11:15am
I just received a call from Brenda at Duke. Ollie's surgery with Dr. Rice is scheduled to start at 11:15am (Eastern Time). She said that we need to be there no later than 9:45am. It's nice to know the exact time now. And it's also nice to know we won't have to beat the sun up in the morning! (Those of you who know me know I am in no way, shape or form a morning person! That's why I work retail.)
Another nice thing about a late morning start is that we won't have to wake Ollie up really, really early to give him his last bottle of formula before surgery. Just really early...like 4:30am! He can have clear fluids up until two hours before surgery. Hopefully he likes glucose water with SimplyThick in it!
Another nice thing about a late morning start is that we won't have to wake Ollie up really, really early to give him his last bottle of formula before surgery. Just really early...like 4:30am! He can have clear fluids up until two hours before surgery. Hopefully he likes glucose water with SimplyThick in it!
Tuesday, March 3, 2009
Surgery has been scheduled...
I'm going to warn you now that this will likely be a bit of a rambling post. (Much like that last sentence...) It's been a long day. We were at Duke from 11:15am until around 2pm. I didn't sleep well last night. I'm tired. And I'm taking a pretty powerful antibiotic to knock out this residual crud in my lungs. Sorry.
So the pre-op appointment went well today. We came in armed with print outs and lots of questions (and statements, too, really). The anesthesia nurse practitioner met with us to go over any health issues as well as surgery and anesthesia issues. We gave her our print outs regarding special considerations for anesthesia with SMA babies and some SMA-specific pre-op and post-op nutrition guidelines. She also noted on Oliver's pre-op report several of our concerns regarding the "best" practices for extubation and the like. They should have a BiPAP machine and mask available for him to use following extubation.
And the date for his surgery is.....drumroll please....next Friday, March the 13th. (I've always like the rarity of Friday the 13th and how considered 13 my "lucky" number for some time now.) We won't know the actual time of the surgery until the night before when we call in to get it.
After the nurse practitioner, we met with a child life specialist. She went over every step of what to expect the day of the surgery: where to check-in, where the waiting room is located, who to ask if there are delays, where Oliver would go for anesthesia, what types of anesthesia might be used (gaseous vs. IV), where the operating room is located, who will be in the operating room during the surgery, where Oliver would go after the surgery. You name it, she covered it. Plus, she answered all of our questions: Can we stay with Oliver in the PICU? Where can we sleep? Is there somewhere to shower? What do we do about meals for us? How many visitors can Oliver have? Where will Oliver go after the PICU? She also physically showed us a G-tube and how it works. She told us suggestions that other families have made regarding this surgery and even what older kids who've had the procedure say about how it feels after the surgery.
I have to say I'm pretty at ease about this decision now. I feel as if we have thought about every possible angle - good, bad, ugly, indifferent. We've done a lot of research and spoken with several different families as well as medical professionals. Everyone at Duke seems to understand that we're the parents and, therefore, we're in charge.
There's one other thing that puts my mind (and stomach) a bit more at ease. Since Ollie is a special little boy with a special little condition, he'll get extra special attention. Cases like his don't happen very often so we'll have surgeons, anesthesiologists, doctors, residents, fellows and nurses observing his surgery. More eyes and ears to watch over him and look out for him in the operating room.
Neil and I have talked together about this before and we're glad that Ollie can help shape future doctors' minds and opinions about SMA.
That's all for now. It's time to get some rest. Please continue to keep us in your thoughts and prayers.
So the pre-op appointment went well today. We came in armed with print outs and lots of questions (and statements, too, really). The anesthesia nurse practitioner met with us to go over any health issues as well as surgery and anesthesia issues. We gave her our print outs regarding special considerations for anesthesia with SMA babies and some SMA-specific pre-op and post-op nutrition guidelines. She also noted on Oliver's pre-op report several of our concerns regarding the "best" practices for extubation and the like. They should have a BiPAP machine and mask available for him to use following extubation.
And the date for his surgery is.....drumroll please....next Friday, March the 13th. (I've always like the rarity of Friday the 13th and how considered 13 my "lucky" number for some time now.) We won't know the actual time of the surgery until the night before when we call in to get it.
After the nurse practitioner, we met with a child life specialist. She went over every step of what to expect the day of the surgery: where to check-in, where the waiting room is located, who to ask if there are delays, where Oliver would go for anesthesia, what types of anesthesia might be used (gaseous vs. IV), where the operating room is located, who will be in the operating room during the surgery, where Oliver would go after the surgery. You name it, she covered it. Plus, she answered all of our questions: Can we stay with Oliver in the PICU? Where can we sleep? Is there somewhere to shower? What do we do about meals for us? How many visitors can Oliver have? Where will Oliver go after the PICU? She also physically showed us a G-tube and how it works. She told us suggestions that other families have made regarding this surgery and even what older kids who've had the procedure say about how it feels after the surgery.
I have to say I'm pretty at ease about this decision now. I feel as if we have thought about every possible angle - good, bad, ugly, indifferent. We've done a lot of research and spoken with several different families as well as medical professionals. Everyone at Duke seems to understand that we're the parents and, therefore, we're in charge.
There's one other thing that puts my mind (and stomach) a bit more at ease. Since Ollie is a special little boy with a special little condition, he'll get extra special attention. Cases like his don't happen very often so we'll have surgeons, anesthesiologists, doctors, residents, fellows and nurses observing his surgery. More eyes and ears to watch over him and look out for him in the operating room.
Neil and I have talked together about this before and we're glad that Ollie can help shape future doctors' minds and opinions about SMA.
That's all for now. It's time to get some rest. Please continue to keep us in your thoughts and prayers.
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